“Have you tried exercising?”
As someone with chronic pain, I’ve heard this question many times before. So many of us sufferers have. So, you can imagine the surprise (and anger) when the chronic pain community learnt that this query is now being actively endorsed by the National Institute for Health and Care Excellence (NICE).
Last Wednesday, NICE announced its new recommendations for tackling primary chronic pain – namely, pain lasting longer than three months without a known cause. Steering away from offering pain medication, emphasis will now go into promoting exercise programmes, CBT and acceptance therapy. Endorsing the shift, Dr Paul Chrisp, director of Nice’s centre for guidelines, told The Guardian, “Based on the evidence, for most people it’s unlikely that any drug treatments for chronic primary pain, other than antidepressants, provide an adequate balance between any benefits they might provide, and the risks associated with them.”
For those who actually suffer from chronic pain without a known cause, however, this approach has been met with condemnation, fear and fury.
What’s problematic about this change of tack is that many already face long delays in accessing a diagnosis for a whole host of chronic pain conditions – particularly those most impacting women and those assigned female at birth. Applying this one size fits all approach fails to address entrenched medical bias in healthcare, ignoring the fact that if you’re not a cis, heterosexual, white man, accessing a diagnosis is not a straightforward or simple process.
Gender health gap
Examine delays between consultation and diagnosis for pain sufferers and you’ll find a picture steeped in medical misogyny. There is still, today, a tendency to attribute women’s pain to anxiety, with studies showing as many as 30 to 50 per cent of women presenting with pain have incorrectly been diagnosed with depression. This can often mean women face longer diagnostic delays than men even for the same illnesses – 20 months for a Crohn’s Disease diagnosis as opposed to 12 months, for example, or up to 16 years for an Ehlers-Danlos Syndrome diagnosis compared with an average waiting time of four years for men.
If you are Black or a person of colour, there are even more barriers to having your pain believed. A study in 2016 revealed that, out of 200 medical students, half believed their Black patients felt less pain than white patients due to thickness of skin. Then there was the study that discovered Black and Hispanic women were half as likely to receive a diagnosis as white women when presenting with the painful and debilitating condition of endometriosis.
Yet in bringing in these new guidelines, Nice has failed to address the fact that, due to these biases, women, Black people, people of colour and LGTBQ+ patients may have a valid medical condition in need of pain management that simply hasn’t been diagnosed.
Take 22-year-old Lexi from Liverpool, who runs the Instagram account Undiagnosed_Drama. Lexi suffers with chronic pelvic pain because of her ongoing chronic UTI, and while she suspects she has suffered nerve damage, she has never been diagnosed.
“Without a diagnosis for the pain, nobody understood what it was because my scans were all clear,” she explains. “After urology didn’t know what the matter was, I was sent to a pain clinic. The doctor saw me for 30 minutes. He gathered an insight about my life and because I drove there and walked in easily, and could continue activities in my daily life, he proceeded to ask me, ‘is it all in your head?’ I burst into tears. He never gave me anything after that, he discharged me there and then.”
Lexi’s experience is not uncommon. Katie Beard, an actor and filmmaker based in London, suffers from daily chronic pain that impacts her quality of life, leaving her unable to do activities that used to bring her joy such as dancing, running and strength training. One of the main barriers Katie has found has been accessing referrals to investigate and find answers to her pain. “I have been told by my GP ‘We will never get to the bottom of your pain. I think its emotional. Go and see a therapist’,” Katie sighs. To access support and help she has had to go private, which has caused great financial strain.
It’s important to disclose that, up until 2019, I myself would have been recognised as a patient with primary pain. If it wasn’t for social media and travelling from Northern Ireland to England after a decade of trying to find answers, I would not have had my endometriosis, adenomyosis or crohn’s disease diagnosis. Despite numerous consultations at home in Belfast, my chronic pain was previously described as a mystery and I firmly believe it still would be, if I had not had the privilege to seek a second opinion further afield.
Like myself, Lexi and Katie, Sara has also struggled to access support and help for her chronic pain. Based in Manchester, she suffered for years, only accessing help and diagnosis after going private. She fears the new guidelines will impact detrimentally on those still facing a similar situation.
“I feel like it’s furthering the gap and discrimination women face with healthcare already,” she explains. “The fight we put up to get help while we’re suffering is just exhausting, so the guidelines make me so angry. On this journey, even when I was crying out in pain, I wasn’t offered pain relief anyway. Now it’s like a pat on the back for allowing me and others to suffer.”
Before the changes were made and the new recommendations came into force, NICE could and should have acknowledged the very real gender and racial biases that prevent people in pain from accessing a diagnosis. There was an opportunity here for officials to make recommendations to help bridge the gap between the care different sectors of our society face, but it has been devastatingly ignored.
Now, until this cruel policy is reviewed, and strides are made to tackle healthcare bias at a grassroots level, the cycle will continue. And it is people in pain who will ultimately pay the price.